What a two year ride it has been!
On June 9th Lurie Children's Hospital celebrated their second year of being opened. This day is a great day as well as for us a VERY real reminder of how our lives changed during the week of their "Grand Opening"...
Two years ago on the 10th I sat at home with our then nine and a half month old son and as he was sitting in his bouncy chair sleeping I remember praying through out the day over him because I KNEW that something was really wrong with him. Between the dates of the June 7th and June 9th we had been to the hospital already 2 times because of REALLY high fevers and what they said was just an ear infection..
On the 10th Zeke had physically turned worse then he had been the previous 3 days. He wasn't peeing, pooping, eating, or drinking and I just had this gut feeling we needed to get him to the ER again really soon. He was really lethargic. Eric had been in an intensive class at school that day and the second he got home we loaded up and headed to the hospital. I remember driving down Lake Shore Drive heading toward the hospital and seeing the skyline and all of the rush hour traffic thinking my son is sick, I am in this HUGE city, and I have no family here... Even now reflecting on that day I am brought to tears. I remember talking with Eric and us agreeing that something was REALLY wrong with our son and that this was not your "typical" ear infection. We got to LCH and went into the ER they took us back in to room 8 I remember lots of different doctors and nurses coming in and finally they told us that they were going to keep Zeke over night so he could be observed because he was obviously dehydrated and they needed to rehydrate him and figure out why his fever of upwards of 105.4 fairly consistently for four days had not broke, even with Tylenol. They started off by saying they were going to do a urinalysis to make sure he didn't have a bladder infection and that they were also going to do a blood draw to make sure his blood looked good. Little did we know this would be the first of over 273 blood draws our tiny son would get over the next two years.. Within an hour of drawing his blood a resident who shall remain nameless came into our little room and said "Well, his counts are a little off." of course we had NO CLUE what "A little off" meant so I said what do you mean? What does that mean? She said Well, it could be anemia, (I heard blah blah blah) to Leukemia to (again blah blah blah). My mind stuck to the word Leukemia. In the matter of about 2 seconds I thought wait, isn't Leukemia cancer? Wait, the girl in the movie A Walk to Remember had Leukemia, it IS cancer... She died... My son is going to die!!! I lost it, I began crying uncontrollably feeling extremely alone, scared, and helpless. The Resident assured me that they weren't sure yet if that was what it was so basically don't freak out yet.. I didn't care I freaked out!
Zeke's Hemoglobin which carries oxygen through out the blood should have been between 11-14 and he was at a 3. They do a blood transfusion at 9!!! His White count should have been at a 5 and it was at .3. And his platelets were half of what they should have been. Our son was dying, and if they didn't transfuse then he would get worse quickly. Our fellow Dr. Choi came into little room 8 and confirmed the blood results and told us that they think Zeke does have Leukemia. He told us that they needed to get him up to the PICU so they could monitor him and start him on his first of many blood and platelet transfusions. He also told us that once they got his blood stable that he would need to be taken into surgery the next morning to do his first of 4-5 bone marrow biopsy's. On the morning of the 11th he was taken back where they did the bone marrow biopsy and they told us they would not have those specific results as to what kind of Leukemia he had until the 13th. I remember being so physically ILL from the 10th through the afternoon of the 13th. I remember spending a LOT of time in the bathroom.. The afternoon of the 13th Dr. Choi came in, along with our social worker, and Chaplin Jim. I remember Jim standing near Zeke singing a quiet song to him to get him to calm down, and Dr. Dan pulling up a chair and had us sit on the little couch in our room. I remember him looking at us with empathy and sorrow and say to us I hate to be the one to tell you, but Zeke does have leukemia.. I had lost it again, and began to cry. I remember Dan grabbing my hand in empathy and saying I will do all that I can to make Zeke better. After we were able to calm down then he began to explain to us the Exact type of Leukemia that Zeke had. It was called Infant ALL. Infant because he was under the age of one at diagnosis and ALL Being Acute Lymphoblastic Leukemia. Being an infant with ALL placed Zeke in the HIGH RISK category for relapse. But with Him having the "Standard" Leukemia that placed him at the lower risk end of the high risk category.
We began treatment that day and have continued it since then. As most of you know we were not out of the woods at this point because two weeks into Zeke being diagnosed his appendix had exploded. Which caused a whole new issue and stress. Again, we almost lost our little boy... He lived a total of 2 weeks with a ruptured appendix... Now you cant tell me God wasn't watching over him! NO ONE lives that long with a ruptured appendix!!! With the ruptured appendix Zeke developed multiple blood infections and was on 5 different antibiotics. God protected our boy and gave our surgeon wisdom on what needed to be done. He was given an Ileostomy which allowed him to poop into a bag. This was done because his immune system was so compromised that it would not have been able to heal if they put him back together. Most kids that die while in treatment either die from the toxicity of the chemo or from an infection because of having a compromised immune system.
Here we are now two years out... On June 17th Zeke will have his VERY LAST (God willing) Chemo injection and spinal tap! (this will make 19 Spinal taps in two years!!!) Then he will have 29 more doses of oral chemo that will lead us up to July 14th. We are so thankful that through our faith in God and your diligent prayers the Zeke is where he is today, a happy, fairly healthy, amazing little boy! Please continue to pray for our family as we begin to adjust from treatment to "survivor" mode. I ask that on Tuesday June 15th that if you have a Zeke shirt to please wear it and post the picture on his Facebook page in honor of the fight that has been fought and won! Our little boy is a miracle and we want to honor him.
Thank you for your time in reading this lengthy post!